I started having episodes this past December during which my fingers and toes and sometimes entire feet turn red, the veins in my hands, forearms, ankles and feet (and sometimes legs) swell, and my hands and arms hurt. I started logging my flare ups and activities and noticed that this seems to be happening mostly when I am eating hot or spicy foods (oh, how I love thee, pho and gumbo and chili). This occurs several times per week in only the late afternoon or evening. I saw a rheumatologist who ruled out systemic inflammatory disorders, ran nerve studies and then just shrugged and told me I have Raynaud’s and right carpal tunnel syndrome. I have been researching my symptoms for weeks with no success (thank you, Dr. Google, for sending me to informative sites on varicose veins and hemorrhoids) until I typed in the magic combination of search terms tonight and stumbled in here. EM is the only thing that seems to fit my symptoms. Some of the photos in here look just like the photos on my phone. Do you have any recommendations on the next steps I should take in pursuing a diagnosis? A friend recommended seeing a vascular specialist due to the blood vessel involvement and the fact that I have had high cholesterol since childhood (I’m 33). Any thoughts would be greatly appreciated.
Have you any other triggers or is it just spicy foods? Your symptoms sound just like mine but spicy foods only became a problem in the last 6 months (I began this journey in early 2010). I too self-diagnosed from the Internet and EM was then suggested to me by a neurologist and with his recommendation, and best part of a year late, the Dermatologist agreed. I gain relief from aspirin so was tested for myeloproliferative disorders - negative - and was then left to get on with it, discharged with a diagnosis but not much else. I have Raynauds and am now getting that investigated along with its connection to EM. People get diagnoses from such a range of specialists and it seems you just have to keep plugging on until you turn a light on in some doctor’s brain.
Hi Nel 
Hot steaming foods and emotional stress, to a lesser degree, seem to be triggers, as well, although sometimes there is no apparent trigger. What is very strange to me is that I only ever have flare ups in the late afternoons or evenings after work. For example, I had hot beef noodle soup with sriracha sauce for lunch today with no flare up. Then I had a mug of cream of mushroom soup and broccoli (ok, and some chocolates) for dinner, and bam. The minute I stood from the couch to put my dishes in the sink, I got the telltale stabby feeling in my right forearm, my hands went red, and my veins started swelling. I kind of expected it because I felt very cold when I got home. I’ve never been one to feel very cold, but lately I’ve been having times where I just can’t get warm.
Question: With Raynaud’s, do you get the full range of color changes(white-blue-red)? The rheumatologist I saw said I have Raynaud’s because fingers turned slightly blue when he did an injection for my carpal tunnel syndrome, but that’s the first time I’ve ever seen them go blue, and I’ve never seen them go white.
When they are cold my fingers go a dusky grey colour then shrink in and turn dead white as far along as the base knuckles at times but usual to the middle knuckles. As they warm up they go through bluey purple to bright red and hurt as they change colour. When they flare they swell a little and feel and look fiery hot. My toes go dusky then purple and red as they warm up.
Attaching a photo taken indoors after my attempt to warm them up failed and they started to go white and numb.
Nel
371-image.jpg (235 KB)
I don’t find that hot steaming foods cause flares, just hot spicy foods. Like you I have my main flares after about 3.30 in the afternoon. I live in London in an area famed for its Indian restaurants and we have a great one at the end of our road. We used to wander down at 7 in the evening for a curry but from several months ago I cannot do it. The whole of me gets desperately hot and as well as feet and hands my face flares and facial flares are to be avoided at all costs. I now have my curries at lunchtime and they are no trouble! My problem time is from 3.30pm for 12 hours. I can’t have any bedclothes over my legs at night until 3.30 in the morning when I can pull up a sheet and blanket. No wonder my GP looks at me as if I am making up fairy stories.
I find it very difficult to know whether the house is too cold or it is just me and usually have to check the thermometer. I shiver uncontrollably when having a flare on a cold night and often in the evening find even warm water will not restore warmth to my hands.
Chocolate therapy is good though:-)
NolaSue said:
Hi NelHot steaming foods and emotional stress, to a lesser degree, seem to be triggers, as well, although sometimes there is no apparent trigger. What is very strange to me is that I only ever have flare ups in the late afternoons or evenings after work. For example, I had hot beef noodle soup with sriracha sauce for lunch today with no flare up. Then I had a mug of cream of mushroom soup and broccoli (ok, and some chocolates) for dinner, and bam. The minute I stood from the couch to put my dishes in the sink, I got the telltale stabby feeling in my right forearm, my hands went red, and my veins started swelling. I kind of expected it because I felt very cold when I got home. I’ve never been one to feel very cold, but lately I’ve been having times where I just can’t get warm.
Nel, I feel your pain with the curries. I live in New Orleans, Louisiana, and spicy food is tough to avoid. I’m not sure how I’m going to manage now that we’re into crawfish season. I guess I will have to have boiled crawfish for lunch and smell like them for the rest of the day (my coworkers will love that).
It must be unbearably hot in Summer in New Orleans and that can’t be easy, spicy food or not. All I know about crawfish is Elvis Presley in King Creole! I thought they must be what we call crayfish, which I once are on holiday in Spain, and thanks to google could check that out and also watch The King on YouTube while I have breakfast.
At first I missed the sheer convenience of saying “I don’t know what to cook, let’s go down the road to the ‘Karahi’”. but my body knows what’s bad for it and the suggestion now would make me shudder. Still enjoying hot food at lunchtime so I can’t complain.
I imagine you have air conditioning at work which must be difficult too.